Not Fade Away: A Memoir of Senses Lost and Found (5 page)

O
ne warm June evening when I was fourteen Dad, Polly, and my brothers and I sat down to dinner. Polly had made us pasta, as usual. The country was in the midst of the pasta craze. It was before low-carb diets were on the radar, and everyone was convinced that low-fat, high-carb diets, the staple of the long-distance runner, were the way to go. Oh, if only that had been true. Polly had been handed three constantly hungry teenagers to feed and invested in a thick cookbook full of pasta recipes, and each night we’d joke around the table about whether we were eating pasta number 128 or pasta number 215. My dad sat at the end of the table with the top few buttons of his work shirt unbuttoned and his sleeves rolled up carelessly as we ate. Our three golden retrievers, Cubbie, Renner, and Star, lay outside, just behind the French doors that led to our yard, their big brown eyes staring at me with longing, wanting nothing more than to come gobble up whatever we (mostly me) had managed to spill and to lie at our feet. I already knew that when I had my own dog I would have no such rules; I’d never be able to resist those eyes.

My eyes were quickly diverted from dog watching and back to the table when my dad said, “Polly and I have special news to share with you guys . . .” By this time, I was not a big fan of “special news” or surprises, given all of the unanticipated news I’d received over the past several years, but I could tell right away that this was different. They were both smiling widely as my dad told us, “Polly is pregnant and we’re having a baby.”

Though it had been hard to accept a stepmother into my life, I was thrilled at the idea of a baby, and at being able to take care of a little brother or sister. “Are we going to find out the sex of the baby? When can we find out the sex of the baby? Do we know what we’re going to name the baby? Can we help choose a name for the baby?” I asked in a rush. The thought of having a sister brought waves of excitement over me, and I became instantly convinced that it was all I had ever wanted. Later, though, as I lay in bed, other thoughts crept in. I wasn’t sure what it all meant. Were Dad and Polly going to have a family of their own? Would we be included? How would our lives change? My dad had always been there for me: He would enlarge every paper and textbook page on his photocopier at work so that I could read them, advocating for me, always offering to help with anything that I was having trouble with. Would I still be his little girl? But the idea of having a younger sister kept breaking through these doubts, and I thought over and over to myself,
Let it be a girl, let it be a girl. . . .

Three or four months into Polly’s pregnancy, I was sitting in my eighth-grade algebra class, willing the clock to move faster. I hated math and science, and they always felt twice as long as my English classes, which would fly by, because there was nothing that I loved more than reading and writing. Then there was a knock on the classroom door, and Francine, the middle school secretary, stepped in and whispered something in my teacher’s ear.

“Rebecca, your dad is on the phone and waiting to speak with you. Please go to the office.” At first I was not as surprised about having to take the phone call as much as I was at having my prayers answered, but my steps slowed as I neared the office, wondering what he could be calling for. I was sure it couldn’t be good. When we got back to the office Francine handed me the phone, and my hesitant “hello” was met with the eager enthusiasm of my dad’s voice. “Rebecca Ann”—this is what my dad called me when either I was in trouble or he was reporting serious news to me—“you’re going to have a sister!” I couldn’t believe it. Finally, at fourteen years old, I was going to have a little sister! I was grinning from ear to ear when I returned to algebra and was completely unable to focus for the rest of class. Would she look like me? Would she share my brothers’ and my goofy sense of humor? She would love them, but I was sure she was going to look up to me most of all. I would teach her everything that cool big sisters teach little sisters, and she would think I was so awesome.

I was so excited during the pregnancy that I wanted to spend lots of time with Polly, and this was when we first grew close. At night, after I’d finished my homework, I’d lie on their bed next to her to brainstorm names for the baby, laying my hand or head on her belly to feel my little sister kicking. We taped up a list of names for all of us to look over and play around with. We all had names that we liked that were included on the list: Zoe, Whitney, Madison, Caroline, Emily. Daniel came up with the name Sierra, which was generally a family favorite because we all loved the Sierra mountains. But Dad was worried that people would always mispronounce the name Sierra as “Sarah,” so it never went far on the list of names. I came up with the name Lauren, which had always been one of my very favorite names for a girl. Until the day my sister was born, we still didn’t know for sure what her name would be.

After a terribly long, drawn-out, and difficult delivery, Lauren Sierra Alexander was born on February 22, 1993. As it turned out, the woman who had just given birth in the room next to Polly had the last name of Sierra. We insisted that it had to be fate, and between that and Polly’s horrific labor Dad finally gave in.

When I held her for the first time I felt so proud, as if I had helped to make her. The name I had wanted for her had been chosen, she was my little sister, and I would be able to do what I wanted to do most in the world: take care of someone else.

I
n February of 2013, I got a call from my junior high school alma mater, the Head-Royce School. They wanted me, in their one hundred twenty-fifth year, to be their distinguished alumna of the year. Which was very flattering but also somewhat surprising (and ironic), because when I was in the eighth grade, one of the high school deans at Head-Royce sat my parents down and explained to them that the school really couldn’t “meet the needs of [their] daughter’s disabilities” anymore. So I left, while Danny and Peter remained there until they had both graduated from high school.

Now, even though I had only graduated from their middle school and not their high school, they considered me an excellent alum, and a distinguished one, complete with Ivy League degrees and an inspiring piece on the
Today
show. I accepted, and admittedly a part of me hoped that Head-Royce would acknowledge their unwillingness at the time to accommodate my needs so that I could continue there for high school. More important, I hoped that after having me come and speak, they’d be open to giving the next student who needed extra accommodations a chance, and
that person would someday be able to stand where I was and say, with all honesty, that this was the place that made it possible for them to be who they were today.

• • • •

Honestly, at the time, I felt mostly relieved to be moving to a new school, a school that was bigger and more diverse. For the first time, I was ahead in my schoolwork and finally got a chance to fully get a handle on my academics, buckle down, and get really good grades. I had never excelled at Head-Royce, which was a small, extremely academically driven private school. Somehow the combination of changing schools and finding out about my disabilities made me want to do well,
need
to do well, and for the first time in my life I started to push myself academically. It felt great to look down at the questions on a test and know that I was going to nail them, and I loved the satisfaction of getting something back with a big, fat red A on it.

It felt especially great because I had already learned that there were a lot of tests that I was going to fail, and even though it wasn’t my fault, it upset me all the same. I knew by now that any test that took place in the doctor’s office wasn’t going to go well, and out on the soccer field, I wasn’t going to be a star anymore—not even close.

There was something about hearing the words “On your marks . . . Get set . . .
Go!
” that created such a rush of energy and adrenaline in me that to this day, even hearing those words brings up feelings of nervous excitement. I remember racing other classmates on the playground of my elementary school when I was a little girl, feeling the rush of wind and hearing the other kids around us yelling and cheering us on as we ran. I used my arms
to propel myself forward just like I saw the football players do on television, when they were running to score a touchdown. I ran as fast as I could, determined to be the first one to hit the wall with my hand, to be the winner. I wanted to be the fastest girl in my class just like Daniel was the fastest boy. Most important, I felt so alive, so free and empowered, even at seven or eight years old. I recognized my strength and ability and I loved nothing more than using it. There were a lot of things that I knew I did wrong—like lying—but I prided myself on my strength and coordination. I knew if I tried hard enough, I could win.

When I started my new high school, one renowned for its strong sports teams—especially girls’ soccer—I wanted more than anything to be on the varsity team. I love to compete: I was always one of the kids picked first to be on a team, and when I came onto the field the girls on the other team would nudge each other and nod toward me, knowing that I needed to be guarded. I relished the butterflies and uncertainty at the beginning of a game, and I always played to win. I would race down the soccer field knowing that I could outrun my opponent and that I was in complete control of the ball. The goalie would see me coming and get ready, focus with all she had, but I knew I was going to get it in. Not necessarily because I was the best, but because I wanted it the most.

I’d been playing soccer my whole life, and I knew I was good, despite my disabilities. What I hadn’t realized was that going from a small private school to a large high school would show me just how little the pond I’d been swimming in had been. So when I arrived for the first day of soccer tryouts in high school, I was confident, until I realized what “good” really meant. I suddenly became keenly aware of all of the things the other players could do that I couldn’t—juggle a soccer ball, see the entire field as they dribbled the ball down it, and play just as aggressively when the
afternoon sun was replaced by the evening dusk and it became more difficult to follow the ball.

Needless to say, I didn’t make the varsity soccer team. I knew I wasn’t as quick or skilled as the girls on the varsity team, but I still held out hope that somehow one of the coaches would see that, considering my visual limitations, I was a damn good player, and that that might make a difference. So I played junior varsity for my freshman and sophomore years of high school before I quit altogether. I was too embarrassed to be a junior in high school and still on the JV soccer team. Hadn’t those years given me enough time and practice to become worthy of playing on the varsity team? Why couldn’t I just try a little harder, be a little better, scan the field just a little faster? I was still giving it everything I had, but it wasn’t enough.

Despite the fact that I was now excelling in school, I wanted to do more, be more, than I was right now, to find a way to fill the void that losing so much, and knowing I would lose so much more, had left in me. For the first time, too, I started to see beyond my own little world. Maybe I had a better understanding of the impermanence of things than many of my peers did. My world had changed so quickly—my eyes, the divorce, Polly, a new school away from my brothers—that I understood at a young age that there were many things that I wasn’t going to be able to control, that were out of everyone’s control. I couldn’t change what was wrong with me, but I started to think about something that my father had taught me, that sometimes the best way to help yourself is by helping others.

As early as I can remember, my father instilled in us the importance of giving back to the community and to the world. There is a Hebrew word,
“
tzedakah,
” that translates as “righteousness” or “justice.” It is generally used synonymously with “charity,”
but what it really means is a balancing of the scales—that charity is not an act of pity, or mercy, or even necessarily goodness, but of justice. You give back to make the world a better, fairer place—when you have an abundance, you share with those who have less. This was always an idea that resonated very strongly with me, though I have always had a much easier time giving help than accepting it.

My father led by example. Not only was he a leader and activist in our community, but he would put everything on the line for something he believed in. In 1984, a man named Kevin Cooper was sentenced to death for the brutal murder of four members of a white family. Cooper had just escaped from a minimum-security prison where he had been serving time for a nonviolent crime. He was found and charged, though the evidence was scant and many believed the trial was a sham, and spent the next twenty years on death row. During those two decades, Cooper, who always maintained his innocence, became an accomplished painter, writer, and speaker, and gained a huge following of people, organizations, and celebrities who believed that he was innocent, and, as the day of his execution grew nearer, the groups rallied together. My father, a corporate lawyer at a big firm at the time, took on the case, pro bono, and, leading a team of lawyers, got a stay of execution granted, ultimately going all the way to the Supreme Court to have it upheld. When his law firm had a conflict of interest with the case, he chose to leave it and pursue justice.

I wanted to be like my father and to reach out to help others. When I was fifteen, in the early nineties, after being extraordinarily moved by a young HIV-positive man named Scott Fried who came to speak at my synagogue, I began volunteering for Project Open Hand, a nonprofit organization delivering meals to people living with HIV/AIDS throughout the Bay Area. I wanted
to know that I was making a real, tangible difference in people’s lives, and I learned at an early age that knowing that I was helping someone else gave me great pleasure and a sense of purpose. I don’t know whether or not my disabilities contributed to that feeling, whether I knew on some level that I was going to be someone who would need help more and more as my life went on, but it was something that was really important to me.

When I first started delivering meals, I didn’t know what to expect. Perhaps that I would go in, chat, help in any way I could. Most people I delivered to, though, would talk to me through the door and ask me to leave the food on their doorstep, or they would open the door just wide enough so they could take the food we delivered to them. They generally didn’t show their faces or want to be seen. It was in the early nineties, and there was still a terrible stigma around the disease, even in the Bay Area, and many of them may have been too sick to want anyone inside. It broke my heart to think of them alone with their pain and illness, feeling shut out from the rest of the world.

When I was seventeen, my father nominated me to run with the Olympic torch as a “community hero,” and he submitted an application through
Sports Illustrated
to the Olympic committee about my work with Project Open Hand and my disabilities. I had no idea, and when they called I thought it was a prank. At first I was embarrassed. I wanted to be known as someone who helped others, but I didn’t want to be known as someone who did this “even though she was disabled.” I got over it quickly though, because how often do you get to run with the Olympic torch? There was a story about it in our local paper, and I ran holding the torch for almost a mile (it’s heavier than it looks), my escort runner beside me, a motorcade behind me, crowds of friends and strangers lining the route and cheering me on.